Tag: control

Ferris wheels. I used to really , really love Ferris wheels. And roller coasters. I loved the up and down craziness of riding The Scrambler. The Flying Swings. Amusement parks were a ball, and I couldn’t wait to go every year with my Daddy to the company picnic to the big park and ride with him . I went with my friend James and tried to get him to go on the double looped Arkansas Twister with me, but he just stood on the ground firmly in his wore out cowboy boots and swore that ‘s where he’d stay with his eyes closed , and pray until I was back on the ground where I belonged . I used to love to go to Hot Springs , Arkansas and ride the elevator up Mountain Tower and stand 216 feet above the Ouachitas and look out over the heights and feel thrilled.

But then one day, I got very sick. I had been pregnant, and I lost the baby . We found out it was because I had lupus . My body turned into this alien thing that I didn’t recognize. It BECAME a Ferris wheel I couldn’t get off of. Around and around I went. I was on The Scrambler, screaming for the operator to let me off. I’m on the Arkansas Twister , but I’m stuck in between the loops, where there’s no solid ground for me to get back to. I know James is praying for me somewhere, but I can’t get down again. The elevator refuses to take me off the Tower anymore. It’s been a long time since this horror park first started . I had a few years where I was lucky , and had a period of remission. Those were glorious times.

But the roller coaster has started back up again . I’ve had to go back on the steroids , the anti malarials, the high level Vitamin D, the major pain killers , and spent most of this week in either a state of insane insomnia, crazy fatigue, with my mouth covered in burn-like ulcers, my stomach in toe-nail churning nausea, or my body bent over in mind-blowing joint pain .

I no longer go to the “real” amusement park. I don’t find anything amusing in that anymore. My body is “Scrambled” enough. I am starting up the Mountain again, with a new rheumatologist. The one plus is , I really like this one, she seems to be really educated, and very compassionate. I can only pray that the view from the top of the Tower is worth this particular ride in the elevator .

Yesterday was such a lovely day . I woke early and the world woke with me , with all the hints that everything good might happen. My body even tempted me with promises of less joint pain, and energy enough to take a small walk down our lane into the sun-tinged air. The wee red fox who calls our farm home greeted me shyly on my way back as if to say, “Happy to see you out today! ” The birds went about their daylight business looking for their breakfasts and for one golden moment I had a dawn that reminded me of what my life had been like so many years ago. I did laundry, straightened my kitchen, and walked barefoot through my tomato patch as I had done so many times as a tomboyish 10 year old , and my Grandpa was one row over again urging me , “Make sure you get them tommytoes off the bottom vines there, PeeWee!” . I wish I could have captured that moment in a mason jar, as we used to do the fireflies , to open today , for sometime in the middle of the night ; the tordol, dexemethesone combo wore off, and the lupus pain came rushing back in , with all the fury of a caged beast , seemingly all the more angry for having been denied its one day. I want to say I’d never had that one moment , that one day, but if I did I’d be lying. If we are all honest with ourselves, we would trade a hundred days , a thousand days , and we HAVE traded them, to get that ONE . That ONE magical day that brings back those gilt-lit days of joy, laughter, memories, barefoot -garden days, sun-warmed beach days, child-filled swing -in-the-park -days, those days where we shake our fists at lupus, at chemo, at whatever has stolen our glitter from our lives, and say , “YOU DIDN’T GET THIS ONE!! THIS ONE BELONGED TO ME!!” , just so we can put a chalk-mark in OUR column , no matter how small, and continue on.

Happiest of Tuesdays to you EveryBUDDY! I hope today finds you doing the best you can with what you have. Sometimes that’s all we can do. The best that we can. Sometimes not even that. Sometimes we can’t even give it our all. There are days we can only give it our “some”. And the perfectionist in me is learning to be okay with that. I am very blessed in that I married a man who is perfectly okay if the house is not spotless every day. I do NOT have to look like a supermodel when I roll out of the bed in the mornings. ( Thank the Good Lord above. ) He met me when I was already very ill , and married me anyway. Needless to say it pretty much all went downhill from there. If angels walk among us, I’m pretty sure he hides his under his grease stained overalls. I read very frequently a question that gets asked on my lupus page, from many of my followers, who are just beginning their journeys with this insidious disease, the question I most dread hearing. “Does it get better?” They can usually mean a few things by this. Sometimes they mean the treatment they receive from friends and family members. As in , “Does the treatment from them get better? Will they understand? Will they be more compassionate and helpful?” I wish I could say yes. But mostly , sadly, the answer is “No.” People , in large part, don’t “Get it” unless they GET IT , and that is something we don’t really wish on anyone. Sometimes they mean , “Will my illness get better?” And the answer to that is a resounding “No. ” as well. Oh how I wish I could say, “Oh yes! The doctors are so helpful. The treatments are wonderful. And the support is great. You’ll be back to yourself in no time. ” But it’s just not true. The best I can wish for them is a period of “remission” a short respite of ease . Now for those of you reading this thinking, “Well aren’t you being a Debbie Downer today??” I don’t mean it to be! I really mean it to be positive, so that when you see someone WITH a disease like we have , you will TRULY understand how HARD we fight to STAY positive. We must make up our own minds EVERY SINGLE DAY that we are going to live to see above the trees. EVERY minute to smile through horrible pain. Our bodies literally hate us. And no amount of King’s Men can put our Humpty Dumpty’s back together again. So we must make the best go of it that we can, and oil our flying machines. If we seem triumphant over some small thing, please remember that maybe even walking down the hall to our bedroom was like a 10K . Standing long enough to cook spaghetti was like a marathon. Taking one of our meds off our list , is relative to soaring over Everest. These are the measures we count our lives by. So please. Don’t take offense if we don’t seem like “our old selves”. It’s been a long , long time since some of us even remember what that was like. Smile with us in the now. You don’t have to “HAVE IT ” to “GET IT” 🙂 Our bodies might seem to be falling apart, but our spirits are still the same on the inside. The wings might be bent, but not broken, at least, not for long. Come fly with us.

My husband took me out for a drive up around the lake that’s about 7 miles from where we live yesterday. They call Arkansas the Natural State for good reason. If you live here, there is pretty much a lake, stream , river, pond, or body of water of some sort near driving distance from where you live. People hunt here, they fish, there are more critters of the furry , scaled, flying, and feathered variety than you could shake a stick at. We have huge loblolly pines, cedars, oaks, practically any kind of tree you could imagine. I love it here.

During my childhood I spent more time outdoors than I EVER spent in. I was a wildling. I hated bathing, combing my hair only when made to, did not wear shoes, rode a horse everywhere , went without a shirt , dressed as a boy; people thought my Dad had three daughters and ONE son, and he most of the time did not bother to correct them. Two of my favorite things , other than riding, were to climb the tallest tree I could find, and the other, were to go up what we called ‘ the dirt road’ and lay in Mr. Plant’s pasture for hours and just watch the clouds go by overhead. There is something so amazing about just feeling the grass under your back, and smelling the trees, and not having to worry about a single thing.

Then I lost all that. Some crazy illness from the pit of wherever these things come from stole that from me. The very sunshine itself made me sick. I couldn’t even get out in it. It were as if I became a vampire. A pale shadow of myself. Smelling the grass made me break out into hives. Pine trees made me come down with infections so severe I ‘d need antibiotics. Heck. I couldn’t even climb a tree without becoming so winded I ‘d feel like passing out. The fatigue was unbelievable.

Fast forward 15 plus years to yesterday and the ride round the lake I was telling you about. I have lupus and assorted other things . We know that now. I deal. The thing is, I have bad spells . I get really sick, so I hadn’t been out , not really ,in so very long, because the problem I’ve been dealing with lately is what they call syncope. That’s a fancy word for passing out. Kissing the carpet. Not fun. No drives. Heh. Shoot. No sitting up for very long without feeling light headed. But I’ve felt better the last couple of weeks so up to the lake we went. It was spectacular. Everything was greener than I have ever seen it. Suddenly a tear leaked out of the corner of my eye. The minute it does my husband starts to pull the car over thinking I’m getting sick. ” What’s wrong? Are you okay?!?” he asked nervously. “Yeah. Yes. Yes. It’s just so beautiful.”

Okay, I’ll just get right down to the brass tacks people. At the beginning of this month , I had kind of made a goal with myself and my page here that I would write every day about lupus, because this is lupus awareness month. But , let’s be perfectly honest here, I suck at daily goals. In large part , BECAUSE of lupus, and in large part because I JUST don’t WANT to write about lupus every day. I mean , seriously. LUPUS sucks huge quantities of big , hairy things. It bites. It blows. I want to write about fun things. Like roller coasters. Okay, so maybe not about roller coasters, I don’t particularly find those fun. But , KITTENS! Or orange sherbet , or ginormous glasses of ice cold coca cola consumed at mind blowing speed! YES! THOSE kinds of things! Not IV infusions , or toe -nail puking nausea, or rashes that make your skin fall off. Or being in the hospital for so long that you’ve moved your entire wardrobe there, and know ALL the nurses and doctors by name, and you’re only 22 years old. I want to write about traveling! To places with names like Zanzibar, and Montenegro, where they serve you things that you can’t pronounce, and maybe you don’t even want to. I want to write about things like kissing my husband on top of a mountain so high you have to sleep on top of it for the night before you can climb back down again. I don’t want to have to write about things like telling my sons , “No . There will be no more babies in Mommy’s belly. The lupus took those parts away.” And I was only 24. I don’t ever want to write again , ever again , about chemotherapy, to kill the lupus , which it does , VERY effectively , but also makes me so sick I wish I COULD die before it does. I would only write about the good things! The things like , my husband holding my hand in the hospital , while I was breathing so few breaths the nurses thought that I was going to go, but I still knew my family was there. I would write that, in spite of all that I have seen , felt and done, every single day of my 36 years has been worth it, I would write that the love I feel for my children surpasses any pain I have ever known, and I would write to those of you in the midst of this fight , that yes, lupus sucks large quantities of big, hairy things. It blows. It bites. But WE bite harder. And I will find and write the GOOD much more than the bad.

In searching for inspiration for writing this series on lupus awareness month, I’ve thought back to many of the things that I have experienced, and many of the things I have learned that have helped me cope. I suppose that is really one of the things that I have to be most grateful for, lupus has taught me more in my 36 short years , than some people would ever learn in a lifetime!

Today’s tip has to do with hospital trips. As lupies, we unfortunately have more than our share of doctor and hospital visits. Since I was young I’ve been hospitalized every year , at least once. Most years , many more times. A lot of the time it would be a rush job, and we would leave the house snatching this, socks, toothbrushes, extra underwear, items flying through the air in hopes that they would reach the suitcase as we ran for the van , and out the door. Finally , after lots of visits where we ended up with no pajamas, or shampoo, we decided we’d start packing me a “just-in-case-bag” . You know , (Just in case I have to hurry to the hospital!) . 😀

Now everyone’s just-in-case bag will be different, depending on what YOU need when you go, but here is a typical list of the things I pack:

Things to Pack Just in Case

1. One extra set of clothes for each day you plan to be gone , five is good ( if you’re like me , you DON’T want to live in the heinie -showing hospital gowns)

2. In gallon zip-loc bags ,roll your underclothes and socks for each day( I like fuzzy character socks!)

7. HAIR STUFF– Yes, I said, “stuff”. A hair brush, gel, a comb, bobby pins, an elastic band, hairspray, whatever you need to tame your hair into some semblance of normal and NOT the Creature from the Black Lagoon, trust me, you will be GLAD you did this.

8. Chap-Stick- or Blistex or Carmex or whatever you use to slather on your lips, heed me when I say……..”BRIIIIIIIIIIIIINNNNNNG IIIIIIIT” your lips will be eternally grateful, I promise.

9. Art paper, pencils or a book to read, and yeeeees, I know, people have tablets now (don’t get ahead of me!) for that kind of thing, but there is just something soothing about the feel of REAL paper!

Today is May the 1st, and kicks off #LupusAwarenessMonth Now for those of you who don’t know lupus is a serious autoimmune disease which causes the bodies immune system to become confused and attack its own vital organs as if they were they were foreign objects. As in your immune system sees your liver and says “AAiaiAIaeeeeee! Intruder! Intruder! Kill it!!!” So into a flare you go. A flare is basically your entire body under attack from within. The lupus cells basically telling all the others, “Suck it up, cause we’re in charge now!!” These flares can wreak havoc with ANY part of your body , at ANY time. Lupus stole my firstborn child from me , at 3 and 1\2 months pregnant, it’s stolen my heart health, as I now have only 35 % function of my heart muscle. It’s stolen years from my life, added up , in doctor’s visits, and lengthy hospital stays. It’s stolen my nervous system health , because the inflammation has irreversibly damaged my function controls . It tried to kill my oldest son in utero , damaging his cardiac nerve beyond repair ,causing him to need a pacemaker at just 9 months. It’s stolen my uterus, my appendix , my gallbladder. If that weren’t enough , the medications I’ve had to take to maintain any semblance of normality of health have side effects you wouldn’t wish on your worst enemy. They’ve leached the calcium out of my bones ,disintegrating my jaw, loosening my teeth and leaving me with the skeleton of an 80 year old lady. I have cataracts, and I’m slowly losing my hearing. The chemo causes my hair to fall out, and my stomach to wish it had never , ever so much as even heard the word food. It has stolen relationships with family members who don’t understand. Who think I am somehow “putting on”, that I WISH to be this way, that I fawn for this attention. When all I could ever really wish for is to disappear down a deep dark hole where I would never have to hear the word lupus again. Yes, lupus IS the great thief. In bits and pieces , it steals until you have no more coin with which to bargain, and so are left the champion. At the cost of all you are, but the champion, none the less. And so , we live to fight another day.